Three Years On

I can’t believe it has been over three years since I was first diagnosed with Advanced Prostate Cancer, it has been a fairly tough time with lots of up’s and down’s. I think the main thing that has kept me going is a positive attitude and the support of my wife and family and to them I say a big thank you.

The diagnosis I was initially given was.

  • Carcinoma of the Prostate T3b N1 M1 PSA 226 Gleason 9

Since then my PSA has been as low as 1.6 and as high as 1585.

In summary here is a list of the main cancer treatments I have been through. Alongside these there have been a number of other treatments to treat the side effects of the main treatment, Steroids for example.  Side effects have been tough at times and diverse, from minor to visits to A&E.

  • Hormone Therapy – Prostap Ongoing
  • Chemotherapy – Docetaxel
  • Radiotherapy – On Spine and Shoulder 3 times
  • Enzalutimide
  • Immunotherapy – Nivolumab and Ipilimumab
  • Chemotherapy – Cabazitaxel
  • Dexamethasone
  • Lutetium 177 – Current Treatment

Below is a list of the different scans and tests I have had over the past 3 years. For the blood tests I have written 42 at least, this is how many blood tests I have had at UCLH, on top of this I have had loads at PAH and with the GP, I would estimate that this figure is closer to 70 blood tests.

I believe to rest to be more accurate.

  • Blood Test 42 at least
  • Bone Scan 10
  • CT Scan 7
  • MRI 1
  • Ultrasound 1
  • Radiotherapy 12/3
  • Prostap Injection 10
  • PET Scan 1

And of course on top of this there have been the regular outpatients appointments and other trips to the hospital.  At times I have been to the hospital everyday for a week and at other times just a monthly visit.

Perhaps the worst trip was when I was hospitalised earlier this year with concerns around spinal cord compression.

I am really appreciative of the hospital staff and the service and support they provide, there have been hiccups but for the most part the service has been excellent and I feel lucky to be able to have this kind of service.

I am hopeful that the Lutetium is working as it should and I look forward to the future.

Oncology Outpatients 18 Sept 2019

Off we go again, back on the train to London and UCLH.

My fingers are double crossed hoping that my PSA is down from 1238 which it was at just before I had the Lutetium treatment on the 23rd August.

I also need to have a blood test at The London Clinic today as I am there tomorrow for a check up with them.

My current issues are my lower back which is causing me some pain and discomfort although pain killers do help. My left leg around the knee is tender, I might have over done it while on the cruise.

And the Shingles, while they seem to be fading the do feel itchy and tender at times, perhaps the just need time to heel but it does seem like a long time since they first developed.

So we arrived about midday for my 1220 appointment to discover that the clinic was running about an hour late.

So we went to see Danny the trial nurse who was able to tell me my PSA which was 1585, not the number I was hoping for but a slower increase over the previous month which saw my PSA almost double.

Danny also said that as I was receiving Lutetium privately I was to be taken off the trial, this did not come as a surprise!

So for now we sit and wait……..

And wait we did, the appointment ended up being two hours late!!!

We were shown into a consultation room and before long Dr Blanka arrived who we have seen a few times in the past.

We spent some time catching up and reviewing how I had been.

It was clear she had not seen my blood test results and she went off to get them.

When she returned she was with Dr Linch who then took over the consultation.

He reviewed the blood test and said all looked fine in regard to white blood count etc. Obviously the PSA had gone up but as it had been doubling we took it as a positive that it had only gone up a few hundred to 1585 a rise of 238 whereas previously it had been doubling. It was also discussed that we really may not expect much until after the second lutetium treatment.

And so the conversation turned to when that might be.

Because we have a holiday booked to Mauritius in October the debate was around whether to have treatment before or after the holiday. It was left that it would be discussed and I would be informed.

Overall everyone was pleased with how the treatment had gone and that I had shown no side effects.

And then the appointment was over, we had a prescription to collect which would take an hour so we popped over to Pret for lunch before returning.

My next Outpatients Appointment was booked for after the holiday on the 23rd.

But for now it was time to head home, we had been out much longer than I had expected.

A Rash

It’s Saturday morning and I am just getting out of the shower when I look at my reflection in the mirror and I notice a light red blotch just above my left nipple.

I look closer and I see another two blotches.

Mmmm, I wonder what that is, I muse?

I touch them and feel no pain or discomfort, there is no itchiness or anything; If I hadn’t seen them in the mirror I wouldn’t have known they were there.

Over the coming days I keep an eye on them.

Something I should have mentioned earlier is that I have two radiation “burns” or marks on my back from where I had the radiotherapy a few weeks ago, these are almost square in shape and as itchy as anything, they also feel slightly raised.

So very different from what is on my chest.

Over the next couple of days I notice that the rash seems to be spreading under my arm and onto my back.

I have started to worry a little but with my oncology outpatients appointment in a day of two, I decide not to go to the doctors.

I do mention it to Barbara who then gives me a through examination but finds nothing else, the rash appear to start above my left nipple and in blotches spread round to almost the exact place on my back, if I had a nipple there!

I am sure it’s nothing major but that doesn’t stop my mind going into overdrive!

Thankfully it’s now the morning of my Outpatients appointment and we can get someone to look at the rash.

And the good news is, I have shingles, better than some of the options I had contemplated.

The doctor thought that it was caused because I was a little run down.

I have also had a cold sore which seems to tie in with being run down or maybe it’s just the change in the weather.

The doctor also thought that the shingles had mostly passed and that no treatment was needed.

Which was good.

So I can relax a little and try and recharge; with the cruise coming up soon it should be the ideal time to recharge and get back into better shape, I may take a few vitamin tablets and have a few more oranges to help me out.

Then on Friday I become a radioactive superhero as I have my first Lutetium treatment and who knows what that may bring, but fingers crossed.

Frustrating And Rewarding

Well it has been a fairly busy week.

I did some research on hospitals in Germany that offered Lutetium treatment and opted to contact the Munich Technical Hospital.

Partly because the consultant had recommended it and partly because it was a direct flight from Stansted.

And so after looking at their website I emailed the International Department with an outline of my history and what I was after.

And then I waited……

After the weekend I decided to phone them, it took several attempts to get through and I was passed around a bit but eventually I got through to the Nuclear Medicine Department.

I chatted to one of the doctors and he said he had seen my email and he would send through more information.

I felt optimistic.

Then I got an email from them stating that they were taking part in the Vision Trial and as I had been accepted onto the trial they could not offer me the treatment.

Which I suppose is fair enough although it did come as a surprise and a disappointment.

So I started to look at other hospitals in Germany when I got a call from The London Clinic saying that they could offer me treatment on the 29th of August, which was great news.

Needless to say, I accepted their offer.

Then a few days later I got another call from them saying they could do the 23rd of August.

I bit their arms off and accepted their offer.

This was great news and just the dates we wanted so no need to go to Germany.

It was also great timing as we had booked a cruise and this date would give me time to recover from the treatment if needed and also time for the radiation to cool down as it would have presented some challenges being on a cruise especially with the sleeping arrangements.

So overall a week or so of a rollercoaster ride, emotions up and down but everything worked out in the end.

A Fairly Big Day

After my good nights sleep (see previous post) I had a bad night last night and just couldn’t settle, partly it was my mind running wild and partly the Dexamethasone helping to keep me awake.

Anyway.

We are heading back up to London today to meet with a Nuclear Medicine Consultant with a view to having the Lutetium 177 treatment at The London Clinic.

It should be OK as I was accepted onto the Vision Trial so my PSMA and everything is OK.

If you recall I was accepted onto the Vision Trial but put into the control group hence looking to go private.

The meeting with the consultant went very well and we spent about an hour with her. She spent time asking about my condition and my treatment so far as well as talking us through the Lutetium treatment.

By the end of the meeting we had agreed a date of 19 September for my first Lutetium treatment, this was mainly due to a break in manufacturing of the Lutetium in August.

Overall I was very happy and really felt that we had moved forward.

We headed home.

Roasting Hot Today

And heading back to UCLH for an Oncology Outpatients appointment to review where we are.

There is a lot to review after the stay in hospital and radiotherapy last week.

I also need to get my head around all the scan results that I had previously had.

But for now it’s getting to the hospital and dealing with the heat.

The journey wasn’t too bad and we made good time. Got to the hospital and had a quick blood test.

Looking at the computer it would seem I have had 32 blood tests at UCLH, which is quite a few. On top of that I have probably had another 20 or more at Princess Alexandra and local all in the space of two and a half years or so.

Blood test done it was off for some breakfast.

Soon we back at the reception and in time for a quick check over with Danny and Ilona the research nurses who took all the usual blood pressure etc.

We were actually called forward almost on time, one of the advantages of an early appointment.

So we had a fairly good chat today and covered a fair bit of ground.

The bottom line is that the cancer is progressing at a fair rate with new sites both on bones and in soft tissue as evidenced by the PET Scan.

It also showed bone mets in my skull but as no previous scan exists we do not know if these are new or not.

On the plus side I have no head or brain issues aside from a slight fog which I put down to treatment.

On the Lutetium front it turns out that you cannot have it within 4 weeks of radiotherapy so that gives us a bit of a timeline.

I should be referred tomorrow and will hopefully get to see a specialist next week with a view to getting the first treatment as soon possible after the 4 weeks is up.

I am very keen to get this treatment started with the hope it will slow things down or even improve my condition.

My PSA is currently 449 which is high but no longer sure how relevant this really is. I guess it is just another indicator to be used alongside

In the meantime I am going to stay on Dexamethasone but a smaller dose and also the morphine slow release tablet but with a view to only taking it at night and using the Oramorph as a pain relief backup if needed.

So bad news and good news.

And I am not sure how I feel.

I am naturally optimistic and want to keep happy and make the most of life but it can be tough.

Hospital Day 2

Well I awoke feeling fairly tired after a tired and restless night on the Ward at UCLH.  What with all the beeping of IV Pumps, staff moving around and argumentative patients and on top of that my own restless mind, it was never going to be a good night.  I also had Dexamethasone late in the evening which would keep me awake.

I was also supposed to stay on my back all the time and that was starting to cause me some backache or perhaps I should say, add to my back pain.

Still it was morning and I was wondering what the day would bring.

Before long the tea trolley arrived and I took a welcome cup of tea.

As I was immobilised I had to use a bottle to wee which wasn’t easy but I coped!

Tea was soon followed by breakfast and I opted for toast and marmalade with more tea.

I was feeling rough and really wanted to have a wash and clean my teeth, how was this going to work?

I was soon hooked up to the drip again and infused with some Dexamethasone, I asked about a wash and was told I would be having a bed bath, can’t wait!!!

Come around 9am Barbara turned up and I was very pleased to see her and she brought Tea and Cake with her, along with a change of clothes and other supplies from home.

Then it was time for my bed bath and time to wave bye bye to the last of my dignity, to be fair the people who did the bed bath were very good and thorough although by the end of it my hair looked like Dr Emmet Brown from the Back To The Future Films!

I was then seen by one of the Oncology Registrars, Dr Yin whom I had seen in clinic before, so he was familiar with my case.  He asked how I was and check me over, he said Dr Linch would be around later in the afternoon and that I was going to be scheduled for radiotherapy but he didn’t know when that would be.

He also said that the MRI scan looked good and while I had a lesion inside my spine it was not putting pressure on the spinal cord and the purpose of the radiotherapy would be to reduce that lesion even more so that it would not grow.  The radiotherapy and dexamethasone should both work towards keeping it small.

It was turning into a busy morning.

I was then visited by a doctor from the radiotherapy team who talk me through the radiotherapy process and got me to sign a consent form.  My takeaway from this meeting was that they were going to start radiotherapy today and for five days and so I assumed I would be staying in for 5 days and started making plans to do that.

Someone would be sent up to take me down to the radiotherapy department later in the day.

Lunch arrived, tuna salad which looked quite nice and wouldn’t get cold as I couldn’t eat it then as I was once more hooked up to the drip for my second Dexamethasone infusion.

Some good news came in that I was no longer under spinal cord compression protocol and no longer needed to be kept immobilised which was great news, it meant I could sit and and walk about, first stop the loo!

20190711_135609

Initially I was a bit wobbly, but I think it was just because I had been immobilised for so long, I used my stick to help me get around and it was good to stretch my legs.  I would also be able to sit up and eat my lunch and not wear some of it like I did last night!

Lunch done I was soon picked up by a porter who took me down to radiotherapy for the planning scan.

I had been through this before so I knew the procedure, they would be doing a CT Scan and marking me up for the treatment, I gained another tattoo just a small dot on my chest, but it is now my third.

20190711_142135

It was at the end of the planning session that I learnt that I would not be having treatment until the 16th, contrary to what I thought I had been told earlier, what was going on?

Back on the 10th floor I just sat down when a physiotherapist turned up to assess me, She gave me a quick examination and asked lots of questions.  We then went for a little walk so she could assess me, and she offered me advice on using the walking stick, she also said she could provide me with another stick which might help.

On the way back I was ambushed by Dr Linch and his team, there was about six of them, we had a chat about how I was, and he said I could be discharged and go home.

Wow, I was thinking I would be in for a few days but was pleased to be going home.

He said that while I clinically had cord compression, I fell outside the parameters for the cord compression protocol which was good, and the aim was to keep me there.

I would have the radiotherapy next week and then see him again the following week for a catch up and a review.

I was now time to plan a quick escape and get home although the hospital had other ideas!!

We quickly gathered my bits together and I got changed, we were told we would go down to the discharge lounge where they would sort out my prescription etc.

This took ages and ages as we waited for the prescription to be fulfilled, we were told it was because I would be getting a controlled drug, morphine.  But still why does it take so long!

Finally just after 6pm we set off home in a taxi, I couldn’t face the tube!

We got home and I felt I would now be able to relax, it had been a long couple of days.

I must stay that all the staff at the hospital were great, kind and caring, there was confusion between departments and at time I felt I was kept in the dark but I guess it was an evolving situation.

Hospital Dinners!

Well today has been a bit of a day with me being admitted into UCLH Hospital!

Not what I expected when I set off this morning for my Oncology Outpatients Appointment. I was expecting a review and an update on all the scans I had had and to find out about the Vision Trial.

I did find out about the Vision Trial and while I was accepted onto the trial, I had the right levels of PSMA, I had been randomised into the Control Group, not what I wanted to hear.

Being in the control group means I would get normal ‘Standard of Care’, which I would get treatment that is already in use and not something cutting edge.

For me this would mean Steroids, Dexamethasone most likely.

I know I am no expert on this but my gut feeling was that the Vision trial and Lutetium 177 was the way forward for me.

But for now there were other things to worry about.

As soon as we started talking about my leg pain and Polymyalgia then the concern was raised that it might be caused by Spinal Cord Compression, this is where cancer in the spine presses on the nerves running through the spine causes pain and weakness.

So the immediate thing to do was to get a MRI of the spine so it could be better reviewed.

I was also surprised to hear that thry were going to admit me into the hospital do they could keep a close eye on me.

I would also be immobilised and would have to stay flat on my back!

This meant I was lifted by 6 people from bed to bed and moved around the hospital by porters.

This was all a very big shock as I had travelled to the hospital and had been walking around. I also had expected to go home.

What was I going to wear!

There was some confusion……

I was moved to the 10th floor where the cancer ward is and moved onto another bed, where I spent the next few hours.

It turns out I should have been taken straight to Imaging for the MRI.

So it was about 7.30 when I finally went in for my MRI having been lifted another 2 times!In the meantime I had my first hospital dinner which was too bad 😁.

The MRI was 45 minutes of discomfort and loud noises, I was glad when it was over.

Barbara had been with me all through the day and had got me a small hospital survival kit.

I was sad when it was time for her to go and look forward to seeing her tomorrow.

Since returning to the ward I have been hooked up to a drip and given some Dexamethasone and some pain killers.

I lie here now in my hospital bed listening to the noises of the ward.

We I sleep I don’t know, the Dexamethasone might have other ideas and my mind is spinning but I need to give it a try.

Apologies for any typos, it’s been a bit of a day!

Cancellation

Got a call today from the Research Nurse to tell me that my outpatients appointment for Wednesday 3rd July had to be postponed a week due to a problem getting my scans read.

Which is disappointing.

I did however find out that I was not eligible for the Galahad Trial which looked at PARP Inhibitors as I did not have the correct gene mutation.

Fingers Crossed for the Vision Trial 🤞.

A Busy Tuesday

I awoke with a lot of pain in my legs this morning, I had been suffering for a couple of days and it was getting worse.

So Barbara booked me an appointment to see the GP and off I went.

I got a taxi to the doctors because I was having trouble walking, the doctors clinic was upstairs in the surgery but they were kind enough to find a room downstairs for him to see me.

It was long before he turned up and I was in.  He asked lots of questions and didn’t do a physical examination.

After the questions he concluded that it might be Polymyalgia, or polymyalgia rheumatica.  This is a condition that causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips and so I could see why he would think that.

He also said another blood test was needed to check for inflammation markers.

He prescribed Prednisolone Steroids to treat the Polymyalgia, the same steroids I had spent the last 6 weeks being weaned off!

So I went to the chemist and picked up my prescription but decided to double check with the oncology team to see if they were OK with me going back on Prednisolone.

Today I also had an appointment at UCLH for a PSMA PET SCAN, to check to see if I was producing enough PSMA (Prostate Specific Membrane Antigen) to allow me to take part in the Vision Trial, the trial which uses Lutetium 117 to kill the cancer cells by seeking them out via the PSMA.

And so it wasn’t long before I was off to UCLH on the train carrying a walking stick to help me along the way.  Barbara was coming with me which would be a great help given my condition.

We arrived at UCLH slightly early but was soon seen by the team in Nuclear Medicine.

The procedure was going to be slightly different to the procedure for a bone scan in that they keep you in for an hour after administering the injection because it is a fairly high dose but with a short life.

So I was fitted with a cannula and before long I was injected with a radioactive source called Galium 68.

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I was lying on a bed and before long I had nodded of.

I was awaken for the scan, I had to empty my bladder and then I was in.

For the scan I had to lie with my arms crossed above my head!

Well that’s OK I hear you say, and it is, for about 10 minutes and then after that it become very uncomfortable moving in painful as time goes on.

So I was very pleased when the 30 minutes of the scan were up and I could bring my arms down to a normal position, I could feel the blood running back into them!!

I was asked to sit outside for a few minutes to recover while they checked the scan.

I asked if the scan showed I had lots of PSMA and like all radiographer they said they could not say and I will have to wait for the results.  Why do they do this????

Although she did smile and say I could go home and relax which I took as code for yes it’s OK so fingers crossed!!

So not I have to wait for my oncology outpatients appointment to find out the result.

Back soon;-)